2010 Annual Conference Exhibitors
American Society of Human Genetics (ASHG)
Website: http://www.ashg.org
The American Society of Human Genetics (ASHG), founded in 1948, is the primary professional membership organization for human genetics specialists worldwide. The Society’s nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others who have special interest in the field of human genetics. ASHG serves research scientists, health professionals, and the public by providing forums to: Share research results at annual meetings and in “The American Journal of Human Genetics” Advance genetic research by advocating for research support; Enhance genetics education by preparing future professionals and informing the public; Promote genetic services and support responsible social and scientific policies.
Website: http://www.genedx.com
GeneDx tests for more than 200 rare Mendelian disorders using DNA sequencing and deletion/duplication analysis of the associated gene(s). GeneDx also offers oligonucleotide microarray-based testing for chromosomal abnormalities, testing for autism spectrum disorders, and testing for cardiac disorders. Services include mutation analysis, carrier testing, prenatal diagnosis and mutation confirmations.
Website: http://www.curetheprocess.org
The Foundation launched the CureTheProcess Campaign to improve the regulatory environment surrounding the approval of treatments for rare diseases. The Campaign focuses on implementing science-driven changes that will increase the predictability of the regulatory process and spur development. The Campaign is endorsed by more than 130 patient organizations. www.CureTheProcess.org
National Coordinating Center for the Regional Genetic and Newborn Screening Collaboratives (NCCRC); Newborn Screening Translational Research Network (NBSTRN)
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Website: http://www.nbstrn.org http://www.nbstrn.org ACMG is home to the National Coordinating Center for the Regional Genetic and Newborn Screening Collaboratives and the Newborn Screening Translational Research Network (NBSTRN). The NCC enhances the activities of the seven Regional Genetics Collaboratives by providing infrastructure, coordination, and resources. The NBSTRN provides a research infrastructure to NBS researchers. |
New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NY-MAC)
Website: http://www.wadsworth.org/newborn/nymac
NYMAC is one of seven regional collaboratives funded by HRSA’s Maternal and Child Health Bureau. NYMAC’s charge is to ensure that individuals with heritable disorders and their families have access to quality care, genetic expertise and information. NYMAC’s region includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia.
Office of Rare Diseases Research (ORDR)
Website: http://rarediseases.info.nih.gov
Office of Rare Diseases Research (ORDR) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH), the Federal focal point for biomedical research. ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases.
Website: http://rareproject.org
The RARE Project works with rare disease patients and patient advocates to raise awareness, build resources and fuel the accelerated development of therapies for rare diseases. The Children’s Rare Disease Network is RARE’s online portal for building community and collaboration among families affected by rare disease.
Statewide Parent Advocacy Network (SPAN)
Website: http://www.spannj.org
The Statewide Parent Advocacy Network provides information, training, TA, support, advocacy and leadership development for families of children birth to 21. SPAN houses NJ’s Family Voices, Family to Family Health Information Center, Parent to Parent, Federation of Families for Children’s Mental Health, PTI, and State Implementation Grant for CYSHCN.
